Health literacy and patient safety: Help patients understand ppt

Manual for clinicians
Second edition
Barry D. Weiss, MD
Removing barriers to better, safer care
A continuing medical education opportunity
Sponsored in part by AstraZeneca
Health literacy and patient safety:
Help patients understand
© 2007 American Medical Association Foundation and American Medical Association.
All rights reserved. The contents of this publication may not be reproduced in any form without written
permission from the American Medical Association Foundation.
Release date: May 2007
Expiration date: May 2009
Health literacy and patient safety:
Help patients understand
Manual for clinicians
Second edition
Author:
Barry D. Weiss, MD
University of Arizona College of Medicine, Tucson
With contributions from:
Joanne G. Schwartzberg, MD, American Medical Association, Chicago
Terry C. Davis, PhD, Louisiana State University, Shreveport
Ruth M. Parker, MD, Emory University College of Medicine, Atlanta
Patricia E. Sokol, RN, JD, American Medical Association, Chicago
Mark V. Williams, MD, Emory University College of Medicine, Atlanta
Removing barriers to better, safer care

The “Health Literacy Educational Toolkit, 2
nd
edition” has been
re-approved for CME credit through May 2012. Please read the
following page for new instructions effective May 2009.
Health literacy educational toolkit, 2
nd
ed
Important Continuing Medical Education Information for Physicians
Effective May 2009



PLEASE NOTE THE NEW INSTRUCTIONS FOR CLAIMING CREDIT EFFECTIVE MAY 2009:

Physicians may earn AMA PRA Category 1 Credit
TM
for this activity – Health literacy educational

toolkit, 2
nd
ed. – by viewing the accompanying instructional video, reading this manual for clinicians,
studying the case discussions, and completing the enclosed evaluation and post-test. The estimated
time to complete the activity is 2.5 hours. Physicians must then complete the CME questionnaire
(including both the evaluation and the post-test) provided at the back of this manual and
submit it via mail or fax to:

American Medical Association Foundation
Attn: Health Literacy
515 N. State St.
Chicago, IL 60654
Fax: (312) 464-4142

All submissions must be signed and dated.

A certificate documenting your participation in the CME activity will be forwarded to you upon
successful achievement of a score of at least 70%.

Original release date: May 2007
Date of most recent activity review: April 2009
Activity expiration date: May 2012



Disclosures for Content Reviewers

Claudette Dalton, MD, Rockingham Memorial Hospital, Harrisonburg, Va. Nothing to disclose
Daniel Oates, MD, M.Sc., Boston University School of Medicine, Boston, Mass. Nothing to disclose

Accreditation Statement

The American Medical Association is accredited by the Accreditation Council for Continuing Medical
Education to provide continuing medical education for physicians.

Designation Statement

The American Medical Association designates this enduring material for a maximum of 2.5 AMA PRA
Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their
participation in the activity.

An AMA continuing medical education program
Accreditation statement
The American Medical Association is accredited by the Accreditation Council for Continuing Medical
Education to provide continuing medical education for physicians.
Designation statement
The American Medical Association designates this educational activity for a maximum of 2.5 AMA PRA
Category 1 Credits™. Physicians should only claim credit commensurate with the extent of their participation
in the activity.
Non-physicians may receive a certicate of participation for completing this activity.
Learning objectives
The enclosed materials will enable physicians to:
• Dene the scope of the health literacy problem.
• Recognize health system barriers faced by patients with low literacy.
• Implement improved methods of verbal and written communication.
• Incorporate practical strategies to create a shame-free environment.
Instructions for obtaining CME credit
After viewing the accompanying instructional video, reading this manual for clinicians, and completing the

case discussions, record your answers to the continuing medical education (CME) questionnaire on the CME
answer sheet provided at the back.
Disclosure policy
To ensure the highest quality of CME programming, and to comply with the Accreditation Council for
Continuing Medical Education Standards for Commercial Support, the American Medical Association
(AMA) requires that all faculty and planning committee members disclose relevant nancial relationships with
any commercial or proprietary entity producing health care goods or services relevant to the content being
planned or presented. The following disclosures are provided:
Author
Dr. Weiss: Research grants and consulting fees, Pzer Inc.
Contributors
Dr. Schwartzberg: Nothing to disclose
Dr. Davis: Nothing to disclose
Dr. Parker: Nothing to disclose
Ms. Sokol: Nothing to disclose
Dr. Williams: Nothing to disclose
CME Planning Committee
Louella L. Hung, MPH: Nothing to disclose
American Medical Association Foundation, Chicago
Joanne G. Schwartzberg, MD: Nothing to disclose
American Medical Association, Chicago
Barry D. Weiss, MD: Research grants and consulting fees, Pzer Inc.
University of Arizona College of Medicine, Tucson
Introduction 6
Health literacy 8
• National Assessment of Adult Literacy 8
Procient skills 10
Intermediate skills 10
Basic skills 10
Below basic skills 10

• Population groups at risk for limited health literacy 10
• Day-to-day problems associated with limited health literacy 12
• Implications of limited health literacy 13
Literacy and health knowledge 13
Literacy and health outcomes 13
Literacy and health care costs 14
Literacy and the law 15
You can’t tell by looking 16
• How can I tell if an individual patient has limited health literacy skills?
Red ags 17
The social history 19
Medication review 19
• Measuring health literacy 20
Strategies to enhance your patient’s health literacy 22
• Making your practice patient-friendly 22
Attitude of helpfulness 25
Scheduling appointments 25
Ofce check-in procedures 25
Referrals and ancillary tests 27
Table of contents
4  Health literacy and patient safety: Help patients understand
Improving interpersonal communication with patients 28
• Communication and malpractice lawsuits 28
• Communication and medical outcomes 29
• Steps to improving communication with patients 29
Slow down 30
Use plain, nonmedical language 30
Show or draw pictures to enhance patients’ understanding and recall 32
Limit the amount of information given at each visit—and repeat it 32
Use the “teach-back” technique 33

Create a shame-free environment: Encourage questions 34
- Ask-Me-3 34
Creating and using patient-friendly written materials 35
• Written consent forms and patient education handouts 35
Principles for creating patient-friendly written materials 35
- Depth and detail of the message 37
- Complexity of text 38
- Format 39
- User testing 39
• Nonwritten patient education materials 40
Graphic illustrations (pictures, pictographs, models) 40
Audiotapes and compact discs 40
Videotapes 41
Computer-assisted education 41
Final comments 43
Case discussions 45
Useful resources 48
CME questionnaire 49
CME answer sheet 51
References 53
American Medical Association Foundation and American Medical Association 5
Introduction
6  Health literacy and patient safety: Help patients understand
Communication is essential for the
effective delivery of health care, and
is one of the most powerful tools in
a clinician’s arsenal. Unfortunately,
there is often a mismatch between a
clinician’s level of communication and
a patient’s level of comprehension. In

fact, evidence shows that patients often
misinterpret or do not understand much
of the information given to them by
clinicians. This lack of understanding
can lead to medication errors, missed
appointments, adverse medical
outcomes, and even malpractice
lawsuits.
There are many reasons why patients do not
understand what clinicians tell them, but key among
them is inadequate health literacy—i.e., a limited
ability to obtain, process, and understand basic health
information and services needed to make appropriate
health decisions and follow instructions for
treatment. Clinicians can most readily improve what
patients know about their health care by conrming
that patients understand what they need to know and
by adopting a more patient-friendly communication
style that encourages questions.
The need for today’s patients to be “health literate”
is greater than ever, because medical care has grown
increasingly complex. We treat our patients with an
ever-increasing array of medications, and we ask them
to undertake more and more complicated self-care
regimens. For example, patients with congestive heart
failure were prescribed digoxin and diuretics in the
past, while today’s patients take loop diuretics, beta
blockers, angiotensin converting enzyme inhibitors,
spironolactone, and digoxin. They may also receive
a biventricular pacemaker that needs monitoring,

and they often take medications for hypertension
and hyperlipidemia. In the past, these patients were
simply instructed to decrease their physical activity,
but now they weigh themselves daily, report weight
gain to their clinicians, eat low-sodium and often
low-fat diets, and participate in structured exercise
regimens. Similarly, therapy for patients with asthma
was once limited to theophylline pills, but today
these patients must learn to use inhalers with spacers
American Medical Association Foundation and American Medical Association 7
and understand the difference between controller
medications and rescue medications. They must
also test their peak ow rate, take tapering doses of
prednisone, and identify and eliminate allergens from
their homes. Patients with diabetes may have the
most difcult task of all, as they need to understand
factors affecting blood glucose control so they can
modify insulin regimens on a meal-to-meal basis in
response to nger-stick glucose measurements.
Unfortunately, current data indicate that more
than a third of American adults—some 89 million
people—lack sufcient health literacy to effectively
undertake and execute needed medical treatments
and preventive health care. Inadequate health
literacy affects all segments of the population, but
it is more common in certain demographic groups,
such as the elderly, the poor, members of minority
groups, and people who did not speak English during
early childhood. The economic consequences of
limited literacy for the US health care system are

considerable, estimated to cost between $50 billion
and $73 billion per year.
Since publication of the rst edition of this manual,
a great deal of new information has become available
about the effects of literacy on health care and
health outcomes. Much of this information has been
described in research papers and in a report on health
literacy from the Institute of Medicine.
In the pages that follow, this manual reviews the
problem of health literacy, its consequences for
the health care system, and the likelihood that a
clinician’s practice includes patients with limited
literacy. The manual then provides practical tips
for clinicians to use in making their ofce practices
more “user friendly” to patients with limited literacy,
and gives suggestions for improving interpersonal
communication between clinicians and patients.
Finally, the manual concludes with several “case
discussions” based on vignettes in the accompanying
instructional video.
Health literacy
8  Health literacy and patient safety: Help patients understand
Health literacy, as dened in a report by
the Institute of Medicine, is the ability
to obtain, process, and understand
basic health information and services
needed to make appropriate health
decisions and follow instructions for
treatment.
1

Many factors can contribute
to an individual’s health literacy, the
most obvious being the person’s general
literacy—the ability to read, write, and
understand written text and numbers.
Other factors include the individual’s
amount of experience in the health
care system, the complexity of the
information being presented, cultural
factors that may inuence decision-
making, and how the material is
communicated.
National Assessment of Adult Literacy
Every 10 years, the US Department of Education
conducts a national survey to document the state
of literacy of the American public. The most recent
survey, the National Assessment of Adult Literacy
(NAAL) conducted in 2003, provides the most
comprehensive view of the general literacy and
health literacy skills of American adults. The NAAL
tested a stratied representative national random
sample of some 19,000 adults who were interviewed
in their place of residence. Each participant
was asked to provide personal and background
information and to complete a comprehensive set
of tasks to measure his or her ability to read and
understand text, interpret documents, and use and
interpret numbers (Table 1).
While the main purpose of the NAAL was to
measure the general literacy skills of American adults,

specic items were devoted to specically assessing
health literacy. These items focused on the ability of
individuals to understand and use text, documents,
and numbers pertinent to commonly encountered
health care situations. These situations included
care of illness, dealing with preventive care, and
navigating the health care system.
The NAAL results were reported by dividing the
health literacy skills of subjects into four levels
2
:
“procient,” “intermediate,” “basic,” and “below
basic” (Figure 1). Most doctoral-level clinicians fall
into the small percentage of the population that has
procient skills, while 36% of American adults—78
million people—have only basic or below basic
skills. Add to this gure the approximately 5% of
individuals that could not be tested in the NAAL
because they lacked sufcient skills to participate in
the survey, and the total number of Americans with
limited health literacy totals more than 89 million!
Table 1. Examples of health literacy tasks on the National Assessment of Adult Literacy
Level Sample tasks
Proficient
• Calculate an employee’s share of health insurance costs for a year, using a table that shows
how the employee’s monthly cost varies.
• Find the information required to dene a medical term by searching through a complex
document.
• Evaluate information to determine which legal document is applicable to a specic health
care situation.

Intermediate
• Determine a health weight range for a person of specied height, based on a graph that
relates height and weight to body mass index.
• Find the age range during which children should receive a particular vaccine using a chart
that shows all the childhood vaccines and the ages children should receive them.
• Determine what time a person can take a prescription medication, based on information
on the prescription drug label that relates the timing of medication to eating.
• Identify three substances that may interact with an over-the-counter drug to cause side
effects, using information on the over-the-counter drug label.
Basic
• Give two reasons why a person with no symptoms of a specic disease should be tested for
the disease, based on information in a clearly written pamphlet.
• Explain why it is difcult for people to know if they have a specic chronic medical
condition, based on information in a two-page article about the medical condition.
Below basic
• Identify how often a person should have a specied medical test, based on information in
a clearly written pamphlet.
• Identify what is permissible to drink before a medical test, based on a set of short
instructions.
• Circle the date of a medical appointment on a hospital appointment slip.
Source: Kutner M, Greenberg E, Jin Y, Paulsen C. The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy. US
Department of Education. National Center for Education Statistics (NCES) Publication No. 2006-483; September 2006.

American Medical Association Foundation and American Medical Association 9
10  Health literacy and patient safety: Help patients understand
Procient skills
At the procient level, individuals have fully
developed health literacy skills and can read
and understand virtually all text and numerical
information they might encounter in health care

settings. These individuals, however, account for only
about 13% of the American adult population.
Intermediate skills
The next highest skill level is termed “intermediate.”
Individuals with intermediate health literacy skills
constitute about 53% of the population. They can
deal with most of the text and numerical information
they encounter in health care settings, although
they would have difculty dealing with dense or
complicated text and documents. Examples of
intermediate skills include checking a reference
source to determine which foods contain a particular
vitamin or calculating body mass index from
information provided on a graph.
Basic skills
People with basic health literacy skills, who make up
22% of the population, can perform the basic tasks
of reading and understanding a short pamphlet that
explains the importance of a screening test. They
would not be able to reliably perform intermediate-
level tasks. Most would have difculty understanding
typical patient education handouts or lling in health
insurance applications.
Below basic skills
About 14% of the American adult population has
health literacy skills below even the basic level. These
individuals are typically unable to perform the basic
tasks needed to achieve full function in today’s society,
including interactions with the health care system.
They can only perform rudimentary literacy tasks like

identifying the date of a medical appointment from a
hospital appointment slip given to them. They would
typically have difculty with basic-level tasks.
Population groups at risk for
limited health literacy
Persons with basic and below basic health literacy
skills are found in all segments of society. In fact,
most are white, native-born Americans. Nonetheless,
limited health literacy is much more common in
certain segments of the population.
Table 2 shows the percentage of certain “high-risk”
population groups in which many individuals scored
in the basic or below basic levels on the NAAL.
These groups include the elderly, persons with limited
education, members of ethnic minorities, and people
who spoke a language other than English in their
childhood home. Unemployed persons, those with
limited income, and individuals insured by Medicaid
are also more likely to have limited health literacy.
Visual difculties and learning disabilities such as
dyslexia account for health literacy decits in only a
very small percentage of NAAL subjects.
Figure 1.
80 60 40 20 0 20 40 60 80 100
14 22 53 12
Graph illustrates the percentage of participants in
the National Assessment of Adult Literacy (NAAL)
with health literacy scores in each of the four literacy
prociency categories.
Source: Kutner M, Greenberg E, Jin Y, Paulsen C.

The Health Literacy of America’s Adults: Results
from the 2003 National Assessment of Adult Literacy.
US Department of Education. National Center for
Education Statistics (NCES) Publication No. 2006-
483; September 2006.

Below basic



Basic

Intermediate

Proficient
If your patient population includes many individuals
in any of the groups mentioned above, it is likely that
your practice includes persons with limited health
literacy skills. It is important, however, to keep in
mind that persons with limited health literacy do
not t into easy stereotypes. Indeed, one study of
afuent individuals living in a geriatric retirement
community found that 30% scored poorly on a test
of functional literacy in health care situations.
3
And
a cover article in Fortune magazine told the stories of
several billionaire executives who had limited general
literacy skills.
4

As with nearly all poor readers, they
had developed coping mechanisms that worked in
their business and social lives, but might not work
well in an urgent health care situation.
Group Below
basic
Basic Total
% % %
Age (years)
19-24 10 21 31
25-39 10 18 28
40-49 11 21 32
50-64 13 21 24
65 and older 29 30 59
Highest education level completed
Less than or some high school 49 27 76
High school graduation (no college study) 15 29 44
High school equivalency diploma 14 30 44
Racial/ethnic group
White 9 19 24
Asian/Pacic Islander 13 18 31
Black 24 34 58
Hispanic (all groups) 41 25 66
Health insurance status
Employer provided 7 17 24
Privately purchased 13 24 37
Medicare 27 30 57
Medicaid 30 30 60
No insurance 28 25 53
Source: Kutner M, Greenberg E, Jin Y, Paulsen C. The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy. US

Department of Education. National Center for Education Statistics (NCES) Publication No. 2006-483; September 2006.
Table 2. Percentage of adult population groups with health literacy skills
at NAAL below basic and basic levels
American Medical Association Foundation and American Medical Association 11
Day-to-day problems associated with
limited health literacy
Numerous studies in health care settings demonstrate
that persons with limited health literacy skills often
have a poor understanding of basic medical vocabulary
and health care concepts. For example, one study of
patients with limited health literacy found that many
did not really understand the meanings of words that
clinicians regularly use in discussions with patients—
words like “bowel,” “colon,” “screening test,” or “blood
in the stool” (Table 3).
5
In another study, one out of
four women who said they knew what a mammogram
was turned out not to know.
6
Table 3. Common medical words that patients with
limited literacy may not understand
• Blood in the stool
• Bowel
• Colon
• Growth
• Lesion
• Polyp
• Rectum
• Screening

• Tumor
Source: Davis TC, Dolan NC, Ferreira MR, Tomori C, Green KW, Sipler AM,
Bennett CL. The role of inadequate health literacy skills in colorectal cancer
screening. Cancer Invest. 2001;19:193-200.
Lack of understanding is not just limited to medical
terms. Several studies, conducted in both primary
care and specialty practices in different parts of the
United States, show that persons with limited health
literacy skills also do not understand, or are not aware
of, concepts basic to common diseases. For example,
fewer than half of low literacy patients with diabetes
knew the symptoms of hypoglycemia,
7
and the
majority of low literacy patients with asthma could
not demonstrate proper use of an asthma inhaler.
8

Table 4 shows some other problems experienced
by persons with limited health literacy when they
interact with the health care system.
9,10,11,12

Table 4. Some other health system
problems experienced by persons with
limited literacy skills
26%
did not understand when their
next appointment was scheduled
42%

did not understand instructions
to “take medication on an empty
stomach”
(Up to)
78%
misinterpret warnings on
prescription labels
86%
could not understand rights
and responsibilities section of a
Medicaid application
Sources: (a) Williams MV, Parker RM, Baker DW, et al. Inadequate functional
health literacy among patients at two public hospitals. JAMA. 1995; 274:1677-
1682; (b) Baker DW, Parker RM, Williams MV, et al. The health care experience
of patients with low literacy. Arch Family Med. 1996; 5:329-334; (c) Fact Sheet:
Health literacy and understanding medical information. Lawrenceville, NJ: Center for
Health Care Strategies; 2002; (d) Wolf MS, Davis TC, Tilson HH, Bass PF III,
Parker RM. Misunderstanding of prescription drug warning labels among patients
with low literacy. Am J Health Syst Pharm. 2006; 63:1048-1055.
It is important to emphasize that limited
understanding of health concepts and health
information is not solely a problem of persons with
low literacy skills. Highly literate, well-educated
individuals also report difculty understanding
information provided to them by clinicians—usually
because clinicians use vocabulary and discuss
physiological concepts unfamiliar to those who
do not have a medical education. Even patients
with average reading levels are often unable
to understand consent forms used for research

studies on cancer drugs and may not comprehend
medication instructions, such as those for what to
do about missed oral contraceptive pills.
13,14
And, in
a well-known anecdote, a prominent obstetrician
reported that he was unable to fully understand the
12  Health literacy and patient safety: Help patients understand
explanation he received from an orthopedist about
his upcoming orthopedic surgery.
Implications of limited health literacy
The limited ability to read and understand health-
related information often translates into poor health
outcomes. Most clinicians are surprised to learn that
literacy is one of the strongest predictors of health
status. In fact, all of the studies that investigated the
issue report that literacy is a stronger predictor of an
individual’s health status than income, employment
status, education level, and racial or ethnic group.
15,16,17
Be aware that education level is a poor surrogate
for general literacy skills and for health literacy.
Education level only measures the number of years
an individual attended school—not how much the
individual learned in school. Thus, asking patients
how many years of school they completed does
not adequately predict their literacy skills. Indeed,
fully 39% of NAAL participants with a high school
education had only basic reading skills, and 13% had
skills below the basic level.

2
Literacy and health knowledge
Patients with limited health literacy have less
awareness of preventive health measures and less
knowledge of their medical conditions and self-care
instructions than their more literate counterparts.
This knowledge decit has been documented for a
variety of health conditions, ranging from childhood
fever to asthma to hypertension. Persons with
limited health literacy skills also exhibit less healthy
behaviors (Table 5).
18,19
Literacy and health outcomes
Persons with limited health literacy skills have poorer
health status than the rest of the population.
15,16,17,20

Indeed, several studies in diverse settings have
shown that, even after controlling for a variety of
sociodemographic variables, limited understanding
of health concepts (i.e., poor health literacy) is
associated with worse health outcomes. This may
be due to the aforementioned decits in health
knowledge, as well as medication errors, poor
understanding of medical instructions, and lack of
self-empowerment.
Table 5. Some health knowledge deficits and risky
behaviors of persons with limited literacy skills
Health knowledge decits
• Patients with asthma less likely to know how to

use an inhaler
• Patient with diabetes less likely to know symptoms
of hypoglycemia
• Patients with hypertension less likely to know that
weight loss and exercise lower blood pressure
• Mothers less likely to know how to read a
thermometer
• Less likely to understand direct-to-consumer
television advertising
Less healthy behaviors
• More smoking, including during pregnancy
• More exposure to violence
• Less breastfeeding
• Less access to routine children’s health care
Sources: (a) Davis TC, Arnold C, Berkel HJ, Nandy I, Jackson RH, Glass
J. Knowledge and attitude on screening mammography among low-literate,
low-income women. Cancer. 1996;78:1912-1920; (b) Williams MV, Baker DW,
Parker RM, Nurss JR. Relationship of functional health literacy to patients’
knowledge of their chronic disease: a study of patients with hypertension or
diabetes. Arch Intern Med. 1998;158:166-172; (c) Davis TC, Byrd RS, Arnold
CL, Auinger P, Bocchini JA Jr. Low literacy and violence among adolescents
in a summer sports program. J Adolesc Health. 1999; 24:403-411; (d) Arnold
CL, Davis TC, Berkel HJ, Jackson RH, Nandy I, London S. Smoking status,
reading level, and knowledge of tobacco effects among low-income pregnant
women. Prev Med. 2001; 32:313-320; (e) Kaphingst KA, Rudd RE, Dejong
W, Daltroy LH. Comprehension of information in three direct-to-consumer
television prescription drug advertisements among adults with limited literacy.
J Health Commun. 2005;10:609-619; (f) Yu SM, Huang ZJ, Schwalberg RH,
Nyman RM. Parental English prociency and children’s health services access.
Am J Public Health. 2006;96:1449-1455.

American Medical Association Foundation and American Medical Association 13
The relationship between limited health literacy
and poorer health occurs in all socioeconomic groups
and in many disease states. For example, Medicare
managed care enrollees (mostly older individuals)
are 29% more likely to be hospitalized if they have
limited health literacy skills (Figure 2).
21
Medicaid
enrollees (mostly individuals with limited income)
with diabetes are less likely to have good glycemic
control if they have limited health literacy (Figure
3).
22
Indeed, although not all research has come to
a similar conclusion, evidence suggests that literacy
may be the mediating factor in determining which
patients have good diabetes control.
23,24
Figure 2. Percentage of Medicare
managed-care enrollees requiring
hospitalization over a 3-year period
18%
14%
Percent
20 ____________________________________
15 ____________________________________
10 ____________________________________
5 ____________________________________
0 ____________________________________

Low-literacy Adequate literacy
Source: Baker DW, Gazmararian JA, Williams MV, et al. Functional health
literacy and the risk of hospital admission among Medicare managed care
enrollees. Am J Public Health. 2002;92:1278-1283.
Figure 3. Patients with tight diabetes control
35 ____________________________________
30 ____________________________________
25 ____________________________________
20 ____________________________________
15 ____________________________________
10 ____________________________________
5 ____________________________________
0 ____________________________________
Percent
Low-literacy Adequate literacy
Tight diabetes control defined as a glycated
hemoglobin level ≤ 7.2%
20%
33%
Data from: Schillinger D, Grumbach K, Piette J, et al. Association of health
literacy with diabetes outcomes. JAMA. 2002;288:475-482.
Literacy and health care costs
The adverse health outcomes of low health literacy
translate into increased costs for the health care
system. In one small study, the average annual health
care costs for all Medicaid enrollees in one state was
$2,891 per enrollee, but the annual cost for enrollees
with limited literacy skills averaged $10,688 (Figure
4).
25

Another study, this one of 3,260 Medicare
enrollees in sites around the country, found higher
costs for emergency room and inpatient care for
people with limited health literacy.
26

14  Health literacy and patient safety: Help patients understand
18%
14%
Figure 4. Annual health-care costs of
Medicaid enrollees
$12,000 ________________________________
$10,000 ________________________________
$8,000 ________________________________
$6,000 ________________________________
$4,000 ________________________________
$2,000 ________________________________
$0 ________________________________
All enrollees Enrollees with limited
literacy
$2,891
$10,688
Data from: Weiss BD, Palmer R. Relationship between health care costs and
very low literacy skills in a medically needy and indigent Medicaid population.
J Am Board Family Pract. 2004;17:44-47
The combination of medication errors, excess
hospitalizations, longer hospital stays, more use of
emergency departments, and a generally higher
level of illness—all attributable to limited health
literacy—is estimated to result in excess costs for the

US health care system of between $50 billion and
$73 billion per year.
27
According to the Center for
Health Care Strategies, this is equal to the amount
Medicare pays for physician services, dental services,
home health care, drugs, and nursing home care
combined.
28
Literacy and the law
The Joint Commission and the National Committee
for Quality Assurance have both adopted guidelines
specifying the need for patient education information
and consent documents to be written in a way that
patients can understand.
29,30
Accordingly, failure to
provide understandable information to patients may
be a negative factor in the accreditation status of
a health care organization. The Joint Commission
recently published a “white paper” on health
literacy.
31
Our legal system recognizes the patient-physician
relationship as a duciary relationship, which is the
highest standard of duty implied by law. In the case
of informed consent, courts consistently state that
because of the duciary relationship between patients
and physicians, physicians have a duty to fully
disclose, in good faith and in general terms, the risks

and benets of medical interventions and procedures.
With consistency, courts have described informed
consent as a process of educating patients so they
understand their diagnosis and treatment. A Virginia
court stated that consent is not a piece of paper
but rather a process of physicians helping patients
understand their condition for the purpose of making
informed decisions.
32
The South Carolina Supreme
Court declared that a patient must have a true
understanding of procedures and their seriousness.
33

Moreover, in Ohio, a court said that the physician’s
duty to patients includes fully disclosing information
and, as fully as possible, ascertaining that patients
understand the information on the documents they
are signing.
34

For patients with limited health literacy skills,
clinicians thus need to deliver this information in a
clear, plain language format. In fact, clinicians can
best serve their patient population by providing all
patients with easy-to-understand information.
American Medical Association Foundation and American Medical Association 15
You can’t tell by looking
16  Health literacy and patient safety: Help patients understand
Given that 89 to 90 million adults in

the United States have limited health
literacy, you probably see patients every
day who have trouble reading and
understanding health information. In
addition, even persons with adequate
skills may have trouble understanding
and applying health care information,
especially when it is explained in
technical, unfamiliar terms. Patients
may be verbally articulate and appear
well-educated and knowledgeable,
yet fail to grasp disease concepts or
understand how to carry out medication
regimens properly.
Patients with limited health literacy can be difcult
to identify. The population groups listed in Table
6 are known to be at higher risk for limited health
literacy, but keep in mind that many patients within
these groups actually have well-developed skills.
Conversely, many patients with limited health
literacy do not fall into any of the population groups
listed in Table 6.
The important message is that you can’t tell by looking
whether someone has sufcient skills to adequately
understand health concepts and carry out health
care instructions. Because you can’t tell just by
looking, clinicians and medical practices can best
deliver effective medical care by providing easy-to-
understand information to all patients. Later in this
manual, we will show you how you can do this.

Table 6. Key risk factors for limited literacy
• Elderly
• Low income
• Unemployed
• Did not nish high school
• Minority ethnic group

(Hispanic, African American)
• Recent immigrant to United States

who does not speak English
• Born in United States but English

is second language
American Medical Association Foundation and American Medical Association 17
How can I tell if an individual patient has limited
health literacy skills?
Red ags
While you can’t tell by looking, some of your
patients may drop clues, or “red ags,” indicating
they have limited health literacy. If your patients
have ever lled out their registration forms or health
questionnaires incompletely or incorrectly, or taken
their medications the wrong way, they may have
done so because of limited literacy skills or because
they were not familiar with the medical terms and
concepts in these forms. Other clues to limited
literacy are listed in Table 7.
Table 7. Behaviors and responses that may indicate limited literacy
Behaviors

• Patient registration forms that are incomplete or inaccurately completed
• Frequently missed appointments
• Noncompliance with medication regimens
• Lack of follow-through with laboratory tests, imaging tests, or referrals to consultants
• Patients say they are taking their medication, but laboratory tests or physiological parameters do not
change in the expected fashion
Responses to receiving written information
• “I forgot my glasses. I’ll read this when I get home.”
• “I forgot my glasses. Can you read this to me?”
• “Let me bring this home so I can discuss it with my children.”
Responses to questions about medication regimens
• Unable to name medications
• Unable to explain what medications are for
• Unable to explain timing of medication administration
18  Health literacy and patient safety: Help patients understand
It is important to understand, however, that the
absence of such clues does not indicate that a patient
has adequate health literacy. Most individuals with
limited health literacy are undetected by the health
care system. In fact, patients with limited general
literacy skills go to great lengths to hide this from
others, some even going so far as to bring decoy
reading materials with them to the clinician’s ofce
or handing articles about medications or treatments
to their clinician. The majority of patients with
limited literacy skills have never told anyone in the
health care system, and most have never even told
family members (Figure 5).
35
Similarly, patients with

well-developed literacy skills who fail to understand
health information may also avoid asking questions
for fear of appearing “stupid” or annoying to the
clinician.
In other words, you can’t tell by looking and you can’t
expect your patients to tell you.
Figure 5. Non-disclosure of
limited literacy
Percent
90 ____________________________________
80 ____________________________________
70 ____________________________________
60 ____________________________________
50 ____________________________________
40 ____________________________________
30 ____________________________________
20 ____________________________________
10 ____________________________________
0 ____________________________________
Co- Health Spouses Friends Children
workers care
providers
Histogram bars indicate the percentage of persons
with limited literacy skills who had never told co-
workers, health-care providers, spouses, friends,
or their children about their limited literacy.
85%
75%
68%
62%

52%
Data from: Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV. Shame
and health literacy: the unspoken connection. Patient Educ Couns. 1996;
27:33-39,
American Medical Association Foundation and American Medical Association 19
The social history
Some physicians have found it helpful to add a
question about literacy skills to the social history.
After asking about occupation and education, they
add “How happy are you with the way you read?” or
“What is the best way for you to learn new things?”
Use of these and similar questions gives the patient
an opportunity to “open up” and discuss the issue
if desired.
Recent research in this area has focused on patients’
responses to any one of several specic questions
as indicators of limited health literacy skills.
36,37,38
The two questions for which the most validation
data are available are “How often do you need to
have someone help you when you read instructions,
pamphlets, or other written material from your doctor
or pharmacy?” and “How condent are you lling
out medical forms by yourself?” (Table 8). These
questions have been studied in several settings and
have sensitivities for detecting limited literacy skills
ranging from 54% to 83%.
The discussion that follows can lead the patient
and clinician to agree on the importance of
understanding health information, and on the need

to nd alternate ways for patients to learn what they
need to know to care for themselves. It is essential
that such discussions, and indeed any questions about
reading skills, be conducted in a private, safe, and
supportive environment, and that all questions are
asked in a neutral, nonjudgmental fashion.
Medication review
Another suggested method for identifying patients
who have limited health literacy skills is the “brown-
bag medication review.” At the time an appointment
is made, ask the patient to bring in all medications
(prescription and over-the-counter medications,
nutritional and herbal supplements, etc). When the
patient comes to the ofce, the clinician or medical
assistant can conduct the medication review by
asking the patient to name each medication and
explain what it is for and how it is taken.
As patients respond to these questions, note whether
they identify medications by reading the label or by
opening the bottle and looking at or pouring the
pills into their hands. Identifying the medication
by looking at the pills may be a clue to limited
literacy skills. When responding to questions about
how to take the medication, the patient may have
memorized instructions such as “take one pill three
times per day.” However, when probing further with
questions such as “When was the last time you took
one of these pills?” and “When was the time before
that?” the patient’s confusion may become apparent.
Measuring health literacy

A number of instruments have been developed to
assess the health literacy skills of patients (Table
8). For the most part, these tools have been used
for research. Some clinicians, however, have used
these instruments in their own clinical settings
to measure the literacy skills of a sample of their
practice’s patients. Doing so permits the entire staff
to develop a better sense of the literacy level of
their overall patient population, thereby helping
ensure that patient education materials and other
communication modalities are targeted appropriately
to patients’ level of understanding.
While many clinicians and most patient advocacy
groups have expressed concern that patients are
ashamed and will not want to have their literacy
skills assessed when they come to see a physician,
a recent study suggests otherwise. The study, which
involved nearly 600 patients, randomized 10 private
and 10 public practices in Florida into practices that
did and did not assess literacy skills of their patients.
In the practices that conducted literacy assessments,
the assessment was performed by the practice’s
nursing staff at the time nurses obtained patients’
vital signs. Fully 99% of patients in the practices
that assessed literacy were willing to undergo the
assessment, and doing so did not decrease patient
satisfaction. In fact, patient satisfaction was slightly
higher in the practices that performed literacy
assessments, perhaps because the literacy assessment
provided an opportunity for more interaction and

communication between patients and practice staff.
43

20  Health literacy and patient safety: Help patients understand
American Medical Association Foundation and American Medical Association 21
Table 8. Some methods for assessing literacy skills
Methods Description Validated in Length
English Spanish (minutes)
Single question screens
36,37, 38
“How often do you need to have someone help you when you read
instructions, pamphlets, or other written material from your doctor or
pharmacy?” (positive answers are “sometimes,” “often,” or “always”)
Yes No ≤1
“How condent are you lling out medical forms by yourself? ” (positive
answers are “somewhat,” “a little bit,” or “not at all”)
Yes No ≤1
Assessment instruments
Newest Vital Sign
39
(www.NewestVitalSign.org)
Screening instrument for use in
clinical settings. Patients review
a nutrition label and answer 6
questions about the label.
Yes Yes 3
Rapid Estimate of Adult Literacy
in Medicine
40
Used in both clinical and research

settings. Word recognition
list. Patients read list of 66
words and are scored on correct
pronunciation.
Yes No 2
Short Assessment of Health
Literacy for Spanish-speaking
Adults
41
Patient is presented with 50
words, each with a correct and
incorrect meaning, and patient
must select correct meaning.
No Yes 5
Short Test of Functional Health
Literacy in Adults
42
Used mostly in research. Patients
questioned about 4 numerical
items and 2 prose passages about
medical issues from which specic
words have been deleted, and
patient must select appropriate
words from a list of multiple-
choice options.
Yes Yes
8